please tell me it gets better--wishful thinking?

M1

Disastrous second MC visit today.  Nothing for it but to bail and leave, she was in tears and I was close to it.  They didn't tell her I was coming this time---not sure if that contributed.  Only about why wasn't I taking her home.  Too smart for her own good, this one:  the bits about rehab and having the house painted are not flying.  Knows that no doctor has been to see her or told her why she has to stay (of course she's forgotten all about the hospital at this point).   Doesn't want me there, doesn't want anyone else there.

Looks like I'm going to remain a trigger for a long time, seems like nothing to do but stay away.  Kills me.

Quilting brings calm

I’ve heard it can take 3-6 months for a person to settle into assisted living.  My parents were affected by covid restrictions at month 4.    I imagine the timeline is much the same at MC.  That would  also be affected by any natural decline in the health of the person.   I think it will start to feel more familiar and safe to her as she goes along and forgets where she lived before. The ‘ living in this moment’ stage,  I know that future stability doesn’t make things any easier in this moment for you.  I hope you start feeling better about things soon.

Ed1937

M1, I wish I could tell you it gets better. It sounds like it's just going to take time. Hope you can find something to take your mind off of it. Maybe consider staying away for a week or two?

Crushed

My experience DW NEVER ASKED TO COME HOME

I don't know why. but she settled right in.  She was way down in ability even then 

5 years ago in October

toolbeltexpert

M1 that's a hard thing. I feel it in my heart. I will continue to lift you both up in my prayers.

LadyTexan

I am sending love, prayers and virtual hugs for you both.

jmlarue

This has to be so, so hard for both of you. I'm so sorry. There's just no easy answers. If I remember correctly, there was a time not long ago when your DW didn't recognize you or recognize that she had lived in your current house for a good long time. It sounds like that has changed and that part of her memory has returned. Such odd twists and turns to this disease. I tend to agree with some others here. Maybe it would be best for all concerned if you did not visit for a few weeks. No reason you can't get daily updates from staff and remain her strong advocate, especially if they are still tinkering with her meds tying to level out her emotional state.

Joydean

How’s that garden you planted doing? Bet you have beautiful veggies growing! M1, prayers for you both!

M1

You're on the right track Joydean, I'm going to work on the garden today and for the next two weeks to keep myself busy.  The potatoes are up and the beans are in.  The peas did terrible (either the seeds got eaten or just poor yield).  Strawberries look great, time to cover them up or the birds will have all of them, ditto on blueberries.  Had my first asparagus the other night, nothing like it.  Today it'll be the corn, squash, okra, and watermelons going in.  Peppers and tomatoes to follow.

I love it, but it's just not as satisfying when it's just me, I could eat plastic for all I care.  No way past this grief except through it.

LadyTexan

I am finding comfort in the garden. Or maybe it is a distraction from my sadness. Either way, it fills up hours in my day. I have planted 3 tomato plants, 3 pepper plants and a cucumber plant. I also have a dill plant and a parsley plant on the veranda. I added 2 more hummingbird feeders to the backyard and the hummingbirds are loving it. 

Jesse and I spent a good amount of time on the veranda watching the birds. It brought us both happiness and that's a memory that comforts me.

M1 I am so sorry for what you are going through. Please know that you are loved and you are special. You are doing everything you can to best care for your partner. That's all you can do. I know it is painful and miserable. I can feel the anguish in your posts. 

I don't know if it gets better. All I know is that it is this way now. Sometimes I can accept my situation. Sometimes I am enraged by what I see as the unfairness of it all. My faith helps me endure.

MN Chickadee

I do hope it gets better for you. My mother had a very, very difficult transition to MC. Our visits were indeed triggering. When we were there it was all about going home and it seemed to constantly re-start this despair spiral of being reminded of her previous home. She was mostly ok when we weren't there. It didn't seem fair to her or anyone to keep it up. Finally my sister and I were able to visit more successfully after about 4 weeks. She would still try to leave with us but it didn't trigger the intense emotions. (We learned to excuse ourselves to the bathroom and ask staff to step in and engage her while we quietly exit.) Her spouse, my father, was the biggest trigger. He ended up not visiting for 8 weeks. We were worried she would forget who he was but he was determined to allow her to settle in and not undo her progress, which was slow but steady. After 8 weeks she was settling in and dad started to visit. She most certainly had not forgotten him. Called him by name and they held hands the entire visit like young love. They were able to have nice visits then as long as he managed the exit carefully. Even during covid lockdowns, window visits, sometimes months of not seeing him for various reasons she didn't forget him and she knew him until the very end.  If you have to stay away a while it likely will be ok. It doesn't mean that she will forget you or you will have to stay away forever. It may just be she needs some time, hard as it is for both of you. Even in their damaged brains, the love and connection and history can persist through the hard times. In hindsight it was a beautiful part of my parents' marriage and journey. 

What do you think about sending someone else to visit instead for a while? That way you would get some intel on how she is doing from a non-staff source and keep tabs on her without triggering her. A friend or relative maybe? We sent my uncle in a number of times while her immediate family was staying away. I don't know if mom knew who he was or not. She enjoyed his visits but didn't melt down over it.

Ed1937

M1, I'd like to raid your garden. Since we moved, 9 years ago, we don't have enough sun for much at all. Last year I put 8 tomato plants in, and maybe 6 pepper plants. We always had a decent size garden before, and I miss it.

I know it's hard for you, but it will get easier. I promise that.

ButterflyWings

(((M1))) - I am sending you both virtual hugs and added prayers and positive energy. This disease is always a matter of what is least difficult, and less painful. No good news really, it seems. Just ‘less bad’.  

You are in my thoughts a lot. Thank goodness for your garden and a few moments that are healing, though not perfect. Keep your chin up. It does sound like maybe scheduling other socialization for your DP right now, would be better for you and also good for her. 

Friends are there to catch us when we fall — and maybe a schedule of short visits from members of the inner circle that loves you both, can help provide additional feedback on how she is adjusting without triggering her with the one person she feels safe to vent all frustrations on. Your emotional safety matters too. This is so hard. I hope it gets less so, sooner than later.

Jo C.

Things do slowly evolve over time.  No matter what, I always had feelings of regret, but after time the feelings were not as florid and my LO adapted - after a second placement; more about that in a minute.

Just had a thought; I wonder if the staff at the facility did not tell your Partner about your pending visit so she would not tear her room apart, packing up expecting to leave as she did with the first visit.  But then; none of the facilities I have had experience with ever did "tell" my LO they are to have a visitor.  Are they still more or less trying to work with rationing of visitor exposure to lessen triggered behavior?

I actually took my LO home one time.  There was fairly high function and I felt I could make a go of it and my LO would be happier.   House was completely prepared and organized and all "temptations" removed.  Sadly, what I had done with open heart and love did not have a good outcome. Once back in the familiar home, all the prior at-home triggers came tumbling out with all flags flying. Kept trying to deal with it without positive results.  It was truly sad to see that my LO was also more unsettled and unhappy and the most negative of behaviors resurfaced.  My LO had always been in control in the house and could no longer do so because of the loss of mental acuity and found it terribly upsetting.  Negative behaviors including ongoing agitation was the result.  Eventually, not too long after, had to make a change back to care.

Your garden sounds wonderful; what a green pair of thumbs you have.   I would love to see a picture of it if you can take one; bet it is awesome. Asparagus spears fresh grown - yum.  I have always loved eating peas fresh out of the pod when just picked - it seems like that is what the color green would taste like if it had a flavor.

Take good care of you, and know your friends here are sending you their best wishes,

J.

  

Stuck in the middle

M1, it gets better.  It has already gotten better.  Not so long ago your LO was threatening bodily harm over cat food.  That was when you hit bottom.  It's all up from here.  It is Spring, in more ways than one.

Quilting brings calm

M1-  if you have extra produce from your garden- ask the MC cook if they can accept it. Maybe you would feel good about that. If they aren’t allowed to accept it ( health department rules), check into a food pantry at a church, or a ‘ bread line’. Locally here there is something called ‘ Good Samaritan Inn’ which serves two free meals a day. Places like those never have enough produce.

amicrazytoo

I can only imagine how heavy your heart is, keeping you in my prayers.

abc123

Dear M1, I'm sorry to hear this. You have both been on my mind, a lot! I hope it gets easier for you and her really soon. I'm sorry it's so hard. 

Buggsroo

M1

I am not surprised you are feeling such grief, caring for your beloved partner took up all your time and while it was frustrating at times, you had her with you. Now you are in a quiet house and lots of time to think. That is hard, I imagine you were working in the garden will help. I hope future visits will get easier and more relaxed. I hope your partner will acclimate soon.

Love&Light

It was courage that got me through this phase of moving my Dad into MC. I am wishing this for you. It is so very hard.

Jeff86

I am so sorry, M1, that the transition has been so hard on both of you.   It’s a good strategy to keep yourself as busy as you can, even as it doesn’t change the situation.   Hoping for both your sakes that your partner settles in soon, and visits are feasible again.

M1

Our best friends were able to go visit today and reportedly had a great visit.  She was thrilled to see them.  Was confabulating a lot, taking credit for running the place--but that's okay.  The bad news is that she persisted in telling them that I was due any minute to come pick her up and take her home, still has her room completely packed up.  Told them they didn't need to come back because she wasn't going to be there very long.  All of which is fine, but still leaves me hanging.  Not sure how or when to try again.  Maybe I can go with someone else in tow, so that the focus is not just on me--but not sure how/when to even attempt that.  I think it's likely to be weeks yet.  I sure hope this is harder on me than it is on her.  Seems to be the case.

Beachfan

M1,

As the saying goes, “Be careful what you wish for”.  My visits to DH are easy ( note that I don’t say visits “with”- - they are completely one sided.) l am sad that he doesn’t know me, doesn’t know where he is, and doesn’t seem to care if I come or go.  But I am saddened further  by the residents who are more aware and who are clearly missing home or someone, or who are angry in the moment for having been left behind.  I can hardly imagine how hard these first few weeks are for both of you.   Several years ago I attempted to have DH attend a day program; like your LO, he was cognizant enough to know he didn’t want to be there.  I agonized over how to cope with his unhappiness and my need for respite, but COVID put an end to that.  I kept him at home until he no longer knew or cared where he was or who was with him; that made MC placement easier, if there’s anything easy about it.  

I hope your partner settles in and that you can both visit with happy hearts.  It may never get easy, but hopefully, with time, it will get better.  Stay strong and lose yourself in your garden for now.  

Ed1937

M1, it doesn't seem to be getting a lot easier, is it? Would you consider staying away until you get some good feedback from someone else visiting? I know that will be hard for you, but do you think it might be a good thing to do? Sorry it's still hard.

toolbeltexpert

M1 I think about you and your dw alot. Pray for you both and I hope you get some moments of peace.

M1

You know Ed, I don't think it's likely to get better for the foreseeable future unless her disease progresses.  Although it was reportedly a good visit yesterday, it later triggered her to ask the staff repeatedly why she was there and when, specifically, she was leaving--asking them for a specific date.  She reportedly keeps asking to call me repeatedly.  On the other hand, she has reportedly calmed down on exit seeking and wants to know how she can help the staff throughout the day.  

Yesterday she actually played Bingo--won twice---and watched AFV with the group.  Ate dinner with the group, and is spending less and less time isolating in her room.  

So these are good things.  I have a hunch she may just do better without visitors, period.  That seems cruel to me--to most I would think--but it may be the reality.  I have to get used to the fact that I just can't see/be with her much any more, if at all.

Ed1937

M1, I think our wives are a lot alike. I'm very much struggling with potential placement. One minute I'm saying I know it's what needs to be done, then I think the bad times don't really last that long, and I can't place her, especially when I need to make a 15 minute trip to the store, and she says "Please don't leave me". If I do place her, I expect to have the same problems you are having. I'm sure she will be devastated if I do place her.

Beachfan

M1 and Ed,

I am so sorry for both of you and the situation in which you find yourselves. (And anyone else facing placement decisions.)  Ed, I remember the mental turmoil and nauseous feeling while wrestling with the decision whether to place or not to place DH. 

M1, once DH was placed, I worried constantly that I had acted in haste, and my heart skips a beat every time the ‘phone rings unexpectedly, anticipating upsetting news from the MCF.   Things have calmed down considerably here, and I have concluded that whichever path is taken, the caregiver suffers as much (maybe more) than the LO in placement or awaiting placement.  I hope you can both move forward with a sense of peace.  It’s all so hard and unfair!  It will get better. 

DrinaJGB

This is so heartbreaking. I am so sorry you are experiencing this.

  I personally feel that for not my garden of herbs, roses, etc., and my dogs that quite frankly I just might already be dead or in a straight-jacket. Do anything you can to survive.

jfkoc

I know the heartbreak of death but reading these posts again makes me wonder if sometimes it is not easier to have that end. 

The termoil of deciding what is best has to be worse than horrible. The daily strength you must muster unimaginable.

My heart is with you along with all hopes for a smother path.

M1

Jfkoc there’s no question death would be a welcome release. Hard for me not to feel that I’ve abandoned her to strangers. Rationally I know that’s not the case, but I have no idea when/how to reestablish any contact at this point. Maybe I could write, though I’m not sure what to say or how she would respond to that. 

I hope she’s not as miserable as I am.